Wednesday, June 2, 2010

I think blog silence is a vicious cycle. I get busy or overwhelmed and don't post for a few days, then I don't know which thing(s) to post about so I post nothing. Then there's so much that I need to discuss that I'm overwhelmed and tend to shut down the window and say "maybe tomorrow..."

So I'm going to try to catch up.

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I have received many of your sweet emails asking about Robbie and they've meant a lot to me. They're all still in my inbox waiting for me to know how to answer them.

But I still don't.

How is the tube wean? I don't know. Better, I think. But not great. Since I don't really have any professional guidance for this and Robbie has never been typical even to be a typically atypical kid, so I don't really know how to measure what's good, better, or best.

When we started the wean the last weekend in April, he was consuming an average of about 160 calories by mouth each day. Usually 6-8 oz of purees, and maybe a cracker or two. No more than 4oz at any sitting.

These days, he consumes an average of closer to 300 calories per day. Often more. Usually 12-14 ounces of purees, regularly eating 6 oz at one sitting once a day. He also has been eating very small bites of actual table food. He likes hot dogs. He's probably never eaten more than 1/8 of one on any given night, but he picks them up, he sucks & chews on them. He's moving his jaw like he really means to eat it. He nibbles on french fries and chicken nuggets. He will nibble on most bread. He now can eat more like 5 crackers in a day.

In the scheme of things, I think that's great progress. Is it the 1000 calories/day he needs? Obviously not. But he's doubled his caloric intake and more importantly, he's gaining skills. I can SEE a difference. We still get a lot of food thrown in the floor or simply rejected. But sometimes he takes something new and pops it in his mouth and seems to like it. Words can describe how that feels.

He still eats purees better at daycare than at home. At home, I have to turn Handy Manny on about 99% of the time to get him to let me feed him. Not the best habit in the world, but whatever works. But he drinks better at home than daycare.

If I can distract him or catch him in just the right mood, he'll let me give him sips from his sippy cup. He hasn't taken more than an ounce of liquid total at any time, but again- progress. He's gotten hot and sweaty while playing outside a few times and shown interest in drinking. If he's thirsty enough, he'll even hand me the cup and ask for me to give him a drink. We've explored more flavors (different fruit & vegetable juices) but so far nothing seems to irritate him less than water, so I've mostly been just going with water. Anything that helps him trust a little more.

We still do not tube him at all during the day. I did have a weak moment about 2 weeks in. He'd had about 40 calories all day and was cranky as all get out, but wouldn't be fed. He was clearly hungry, but he still doesn't seem to understand food as the solution. He still doesn't really enjoy being fed so much as he is sometimes willing to submit to my desires to feed him. But this day he wouldn't even do that. I finally gave up and tubed him about 4 oz of purees. It did improve his temperament immensely, but I spent the next 3 days feelings guilty. As though wanting my son to thrive makes me weak. Logically, it was the right thing to do, but it felt like quitting.

Fortunately, since then, we have not used the tube during the day at all. He gets 20 oz of whole milk mixed with 2 packets of Carnation Instant Breakfast at a rate of 75ml/hour overnight. Yes, for the first time since we found a formula he could digest, he's not getting any. Our grocery bill just lowered by about 25 dollars per week.

He seems to do fine with that. He still wets all day (I'm sure the purees are what is helping with that) and seems to feel okay. He's vomiting has almost disappeared. We're down to maybe 1 or 2 pukes per week. And to be honest, I lowered his reflux meds a little (down to an adult dose- still huge for a kid of his size) thinking maybe we could wean him off, but that doesn't seem to be working out. I added that 2nd dose back this morning. It's not so much the vomiting, but I have been seeing more and more refluxy burps and signs of discomfort. If he's not ready, so be it.

The biggest news is that he's regained all the weight he lost. He was down 1.5 pounds at one point. That was very hard for me to take. I could see every rib. His pelvic bones were sharp through his skin. I've seen my kid starving before. I really do not wish to ever see it again. But since we've found a good balance with the milk & powder at night, he's regained that weight. And he may have even gained a little more. It's hard to say for sure since I usually weigh him at night and by then he's leaning towards slight dehydration. Those ounces of fluid can make a big difference in his weight. But he was 23 pounds 12 ounces at his last weigh in. Still bringing up the bottom of the growth chart, but he looks good and I'm going more by that than the number.

So overall, I feel like we're progressing. But of course, from the outside looking in- he still gets 60% of his nutrition through a hole in his belly. He still doesn't drink even small amounts reliably. He's not a typical kid. Less than an hour ago, my boss gave me the "oh, my doctor said if he's hungry, he'll eat" while comparing her 11 year old son to mine. Yet again, I explained that isn't true for every child. It isn't true for my child.

Today, I'm okay with that. I see the progress being made and feel confident that we'll get there someday. But some days I feel hopeless. When we have a day when he just won't eat anything at all? I'm terrified & desperate. I was warned that this process is harder on the parent than the child. I absolutely believe that. Robbie seems happier than ever. He's puking less and he has more control over what he does or doesn't eat. he's still being nourished so his energy levels are still decent.

As his parents, though, we still feel like every meal is like turning cartwheels on a tightrope. You never know which was is up, the line is very thin, and the fall is very steep. All we know is we don't dare stop. Our only choices are to move forward or fall down.

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In other news, Robbie turned 2 on Monday. We did have a party and there are pictures. But that will be a post for another day. As are updates on his latest skills & habits. You can always catch glimpses at him on his blog.

15 comments:

I'm glad to hear Robbie is eating more and puking less. That's a good combination! ((hugs)) for your determination and hard work, both physically and emotionally. I know it must take a toll on you. Prayers for continued eating and drinking improvements. He will get there in Robbie time.

AHHHH!!! OMG- I think that is FANTASTIC progress!! (Um, yes, I am yelling IRL too and my husband thinks I'm insane!). (Happy bday miracle boy!) Back to being excited... That is absolutely incredible! I am SO proud of you!!! Not only has he gained his weight back in just a month, but you doubled his PO intake! That is HUGE! In only 4-5wk look at how much progress has been made! Anyone who isn't thrilled about that can shove it. You and Robbie boy are amazing. Yes, it's tough, but you've done the preemie marathon. Just adding an extra part in there. Like a preemie marathon-triathalon. I am so glad he is puking less. He MUST be happier with this just on that fact alone.

I am way psyched, so pat yourself on the back, chin up, and carry on!!! :D

You are doing so great. You are such a good mom. The worst thing in the world is when something is wrong with your baby, but you are handling everything so well, not giving up. I know you don't know anything about me but I am going to be your cheerleader. Go Trish Go! It is really amazing and inspiring to me how you roll with the punches. Just keep going. I wish I could help in some way. I hope tomorrow is a great day for you and Robbie.Amber

Happy birthday, Robbie! Our boys just turned 1 this past weekend. Liam is now having 1 pediasure a day as he needs to get back on the growth chart. Apparently he doesn't weight enough to be on it. Tommy is still on reflux meds. Once I forgot to give them to him until lunchtime and by then he was already quite uncomfortable, so I don't see that changing soon.

I have alternated between daydreams of physically cramming the food in the boys mouths and their happily chowing down on a steak or a big hamburger. This is so hard to do because no matter how you do it, through your method of "starvation therapy" or our behavioral feeding clinic, it all depends on whether or not we can convince them to cooperate with us because they want to do it. I think if all of us parents of tube feeders and preemies traveled around the world we could solve all the worlds problems and stop all the wars. Because lord knows we have the patience of saints and the Mama Bear tenacity to make it happen. You are doing a fabulous job and I would totally have caved and given Robbie the extra daytime bolus too. Love you!